New diagnosis looking for cancer center

zac495

Hello,

I'm new to this board, though not new to cancer. I have NHL Lymphoma - doing well. 

what I have learned - and just told my friend - was find the best place to start with diagnosis and treatment.

They thought it was a hemmoroid. Turned out to be cancer. They found a ring of cancer around the anus. They will do CT scans tomorrow.

My friend lives in Boulder Colorado. Where should they go? What's the best place? 

Is a ring around the anus give us any indication of how bad this is?

Thank you for your response.

Ellen 

Msmoxie

Your request for your friend

 Hello Ellen, I am always sorry to hear of another person suffering from cancer.  I was diagnosed Aug. 2017 with stage 3a anal/rectal squamous cell carcinoma.  I had NO symptoms until an out of the blue episode of fecal incontinence... once the colonoscopy was performed and that doctor told me "there's only ONE way to take care of this... two strong chemos simultaneously with strong radiation therapy and then "required" radical APR surgery"... needless to say once I began my research I was horrified.  I pray that your friend has an excellent primary physician along with all of the other doctors they will begin consulting with... Really, the MOST important thing is to do your homework and make sure to thoroughly understand what each specialist is telling you what they plan on doing for your treatment.  Once I met with my radiation oncologist and told him that I did not want chemo/rad OR surgery at this time (you can read my other threads and my profile to see more about my case)... he was more than understanding that I just want palliative care at this time... while also continuing consultations with chemo doctor ... just to get all of the facts on how they would treat my case.  

So now here I am eight months post-diagnosis... I have had NO chemo... NO radiation... I do take four Lomotil and one Immodium each day just to allow me to work and shop, etc (without it and the tumors on the sphincters... I would hardly be OFF the toilet).   I just got word two weeks ago that I have approval to consult with Memorial Sloane Kettering... the number two cancer treatment center in America)... your friend might need the same help from one of their specialists to get them into the most highly qualified place for help with their particular cancer...  I believe it is in Texas... MD Anderson...  Like my doctor said... "If you want someone that can think outside the box... you have to go to a center that does high volume of procedures and has the reputation... otherwise the typical cancer treatment center must go by "standard protocol" to protect themselves from liability issues".  And even Sloan Kettering has FOUR areas that they report mistakes that affect outcomes (you must research like your life depends upon it...  because it does)...

So... in a nutshell ... I have been taking the wait and see approach... not allowing them to scare me into starting treatment right away.  I am not in pain, I travel for work and I am active and able to live my life... I don't want to be in doctors offices, hospitals, treatment centers and such for the rest of my life... I am doing everything I can to jump start my immune system to take care of the tumors... I am reading the bulletin boards here and numerous books that are recommended ... 

My particular cancer shows a fifty percent survival rate at five years post-treatment (if I would choose that route)...  many of the survivor's stories I have read of people with the same cancer that have also opted out of the chemo/rad live LONGER than that.  

If you or your friend wish to discuss in more detail some of the things I do to help me with the incontinence on a daily basis or have other questions... feel free to send me a private message and we can communicate further.  

Each person is different and one of the main things to consider is your own personal strengths and beliefs ... You really need the confidence to choose what is best for you.  

Sending positive energies and healing energies to you and your friend.

Kind regards, Moxie

mp327

zac495

So sorry to hear about your friend's diagnosis.  You asked where is the best place.  IMO, MD Anderson is tops.  Having said that, I was diagnosed with anal cancer in 2008 that was right on the fence between stage 1 and 2 and was treated locally.  I live near a large city, but am fortunate that one of the major hospitals there has a smaller hospital in my town, along with a very good medical oncology group.  I also lucked out with a wonderful radiation oncologist and colorectal doctor.  My point is that, depending on the stage of cancer, a patient can often get very good treatment near home.  Your friend needs to ask lots of questions of their doctors as to their experience in treating anal cancer.  The guidelines are pretty straightforward.  Your friend should become familiar with the treatment guidelines so that they know if the doctors are up to speed on them as well.  They can be viewed on the following website:  www.nccn.org  A quick online registration is required, but then they will have access to the most recent protocol.

I hope the CT scan will show that the cancer is at an early stage with no spread.  Please let us know how it goes.

LlovesD

My fiancés story

Hi all. This is my first post here. I am very upset and anxious about what happened with my fiance. After a few months of IBS symptoms, he developed a very large hemoriod from straining. After going to a useless Family Practice Dr. for relief from the hem., I got him to go see a GI surgeon to remove this painful hemorid that wasnt going away. This past Friday he went and she had to administer General Anesthesia to removed the hemoroid. After surgery she told him that there is cancer in the lower colon/anus area and that he had to see an Oncologist. I went to stay with him Friday night. He was able to urinate a small amount that night. The next morning he could NOT urinate and I took him to the ER late morning Saturday. OMG, they could not get the cathedor in. 7 different nurses tried and he was in such pain. They had to get the oncall Uroligist there. He finally arrived and got things moving. After this LONG story I'd like to say what was even more upsetting. The PA and nurses in the ER made it seem like there was a scary reason that the cathedor wouldnt go in. I'm thinking cancer in in the prostate and anus. Then I asked the PA what the GI surgeons report said about her findings. He talked to her and told us that her report reads that it's a 'circumferential rectal tumor' not obstructing the anus completely. I spoke with him without my fiance listenng and he implied that it is pretty much fatal. I'm so upet and overwhelmed. I'm terrified to meet with the Oncologist now. He has yet tp get the CT scans and pathoogy. Does anyone know aboit this type of cancer? Please help.

Lisa

zac495

As you can see, my friend

As you can see, my friend Lisa joined the board herself which is good. Yes, MD Anderson and Sloan Kettering are places I know of. - I suggested MD A. - I think there's one in Texas. I'm in PA and was treated at Fox Chase. I have a question since my cancer is different: I'm a moderator on the lymphoma board - and we say: 1. Go to a large cancer center with the best doctors. We don't like people going to a local person. We also explain that one can get diagnosis and treatment from the best, yet get the treatment at the local place. Is that the same for anal cancer? Lymphoma doesn't require surgery so it's the pathology that's the biggest deal - and the right diagnosis. Also- another thing - lymphoma is complicated - people are misdiagnosed a lot. Does that happen with anal cancer or is it "more straight forward?" Should Lisa and D be going to "the best," or can the send the pathology there? 

This board is clearly wonderful - I read Lisa's first post and was glad to see such kind welcomes.

I know I'm looking through lymphoma eyes - so I'm asking questions that are urgent for lymphoma. Don't know about this cancer.

HATE THIS BEAST!

HUGS,

Ellen 

mp327

zac495

Your questions about getting treatment at a large cancer center or locally are valid.  I do believe, for a lot of people, going to places such as MDA are the best plan of action.  However, in my case, since I live near a large city (Atlanta) that has very good medical facilities and doctors, I was fortunate to be able to get very good (and successful) treatment right in my own community in 2008.  I will add that I was staged right on the fence between stage 1 and 2.  Had I been a higher stage, things most likely would have been different and I would probably have found myself in Houston.  Treatment guidelines for anal cancer are very specifically outlined by the National Comprehensive Cancer Network--www.NCCN.org and can be carried out at most major hospitals and even regional and local hospitals for lower stages. 

I think the first question to ask of their doctor(s) by anyone who is diagnosed with anal cancer is "how many cases of anal cancer have you seen/treated?"  Experience matters!  Again, I was fortunate to be referred to a colorectal surgeon who was quite familiar with anal cancer diagnosis and treatment.  My medical and radiation oncologists were also very much up to speed on it.  Patients diagnosed with anal cancer should immediately try to learn as much as they can about the disease and treatment by signing up on the above-mentioned website so that they can ask lots of questions of their doctors.  They will then have vital information about what tests are needed to properly stage the cancer and what the proper treatment should be.

There will most likely be more comments about this and not all people may agree with what I've said.  That's okay.  Each person diagnosed with anal cancer needs to be confident in their doctors and healthcare facilities.  If that means going to a major cancer center such as MDA, then that's exactly what they should do.  I feel very fortunate that that wasn't necessary in my case and that I will soon be celebrating 10 years post-treatment. 

zac495

Thank you for your reply. I'm

Thank you for your reply. I'm SOOOO happy for you - 10 years! I'm at 5! I wasn't fortunate with treatment - stem cell transplant - but I'm alive!

HUGS

Ellen

mp327

zac495 said:

Thank you for your reply. I'm

Thank you for your reply. I'm SOOOO happy for you - 10 years! I'm at 5! I wasn't fortunate with treatment - stem cell transplant - but I'm alive!

HUGS

Ellen

Ellen

Thank you very much.  I'm sorry that you had to have the transplant, but I hope you are doing okay now.  Best wishes to you!

tanda

zac495 said:

As you can see, my friend

As you can see, my friend Lisa joined the board herself which is good. Yes, MD Anderson and Sloan Kettering are places I know of. - I suggested MD A. - I think there's one in Texas. I'm in PA and was treated at Fox Chase. I have a question since my cancer is different: I'm a moderator on the lymphoma board - and we say: 1. Go to a large cancer center with the best doctors. We don't like people going to a local person. We also explain that one can get diagnosis and treatment from the best, yet get the treatment at the local place. Is that the same for anal cancer? Lymphoma doesn't require surgery so it's the pathology that's the biggest deal - and the right diagnosis. Also- another thing - lymphoma is complicated - people are misdiagnosed a lot. Does that happen with anal cancer or is it "more straight forward?" Should Lisa and D be going to "the best," or can the send the pathology there? 

This board is clearly wonderful - I read Lisa's first post and was glad to see such kind welcomes.

I know I'm looking through lymphoma eyes - so I'm asking questions that are urgent for lymphoma. Don't know about this cancer.

HATE THIS BEAST!

HUGS,

Ellen 

zac495

One thing that is not clear about your friends cancer is whether this is anal or rectal cancer; the treatments are not exactly the same.

You make an important point:  it all starts with the pathology...the one physician the patient never sees is the pathologist!.  Squamous cell anal cancer treatments are fairly standard (unless advanced) unlike other cancers.  If there are questions, you can always get a slide review at a major center, but  as to treatment decisions the patient should be seen.

 

I agree with everything mp327 has said about the necessity of being informed and finding a TEAM of physicians that have experience in anal or rectal cancer.; a second opinion (especially if there are options) would be helpful.